When I wake up, pure unadulterated panic with a side of adrenaline courses through my body as I try to make sense of the world around me: what day is it? IS IT day? Or night? What’s happened while I’ve been asleep? Have I let anyone down (again)? Did I do anything in my sleep? Did I bear the brunt of any social media pile ons? Did someone hack my social media and out me (again)? Did I sleep through any holidays or birthdays?

I’m sure you’re reading this thinking: woah, woah, woah! Don’t catastrophize! It’s alright! You just went to sleep! It’s not like the world ends every time you go to sleep! You’re right! But..you’re also wrong.

If you’re like the typical person, you do your nighttime routine (don’t we all have one?) throw on your PJs and you crawl between your sheets, so grateful for the sweet, sweet embrace of your bed. And then, ideally, you wake up 8 hours later with nothing eventful happening in between, feeling bright-eyed and bushy-tailed and ready to tackle the day….right?! Totally!

Unlike most people, when I go to bed at night, I don’t know when I’m going to wake up because I have hypersomnia (hyper = from the Greek meaning over, somnia = from the Latin meaning sleep). I need to get at least 12 hours of sleep to avoid getting sick (separate issue: dysautonomia/POTS) but I usually sleep around 14 hours a night, sometimes longer. As an infant and child I often slept 16-18 hours. My mom said that it was hard for her to do anything with my older siblings because everything had to revolve around my sleep schedule. I can’t imagine how difficult that was.

Fast forward: as a 19-year-old, I had just started seeing a guy, and my mom was supposed to come into town and I was so excited to pick her up from the airport the next day. That night I went to a party with the guy I had been seeing and the next morning I was still so tired (legitimately tired) so I took a nap at his house. My mom’s plane landed and she couldn’t get ahold of me. She was terrified. She called and she called and she called with no answer.

I finally got ahold of her over two days later. I had been asleep the whole time. I wasn’t under the influence of anything other than my own body. I was just so exhausted and not from anything I did. I felt so incredibly miserable when I saw my mom. She was truly distraught. She had contacted the police (obviously) who had told her I had probably just been having fun. The worst part of the whole thing was that this wouldn’t be the last time hypersomnia would cause me to scare or disappoint someone I loved…it wouldn’t even be the last time I did it to my mom. I slept through Thanksgiving when it was just the two of us and she was waiting for my call.

Hypersomnia is letting people down. It’s missing out on life. It’s sleeping through classes and exams and not being able to tell your professors what’s going on because they won’t understand and when you’ve tried in the past to be open and honest it’s backfired. Hypersomnia is depression, anxiety, stigma and people being afraid to talk about those things because maybe they’re afraid of being mentally ill and further marginalized by the medical community (and maybe there’s some internalized ableism there, too). It’s sleeping through your cat’s insulin…and earthquakes…and fire alarms. It’s sleeping so long that when you try and eat you get sick because your body has gone without food and water for so long. Hypersomnia is missing out on the things that matter MOST to you, the moments you can’t get back, with people who are now gone forever…and having to reconcile that with yourself and the ones who are still here. Hypersomnia is brain fog and sleep inertia. It’s having trouble telling what happened when you were asleep and what happened when you were awake (the blurring of dream and reality.) Hypersomnia is disability for some of us and impacted relationships for most.

Hypersomnia feels like going under general anesthesia. It’s like being drugged. When the feeling takes hold of you you can’t fight it. It’s like being dragged under water when you can’t swim and you’re tired of trying to pretend you can, you’ve spent so much time and energy pretending you can.

Yes, I spend my life sleeping. But… at the same time I spend my life dreaming, and a lot of the time, I spend my life dreaming of beautiful things, fantastical things, hopeful things.

Share the Journey Stories

Words escape me. I am a reader, a writer, and a highly educated woman with multiple degrees. Eloquence is high on my list of valued traits. Communication is one of my strengths, and something I’ve always been commended for. And yet, words escape me. I stutter, I stumble, I am tongue-tied. It’s like trying to grab water in your fist.

That is part of what it feels like to have brain fog, a symptom of multiple chronic illnesses, including my idiopathic hypersomnia. You can’t find the words you are looking for, even everyday words. But I am not stupid. I do not have a low vocabulary. I have a Bachelor of Arts in English; communicating in a clear and concise manner was something I was trained to do. But words escape me. Not just once in a while. All the time.

Brain fog is just one aspect of IH. It isn’t even the biggest aspect, nor the most important. However, it matters because how can you convey what it is like to have constant all-consuming fatigue if words escape you?

I would say that my fatigue is a “maelstrom,” or a “torrent” within and surrounding me, but the connotations of such descriptions bring up thoughts of fast and wild disasters. Fatigue is much more subtle and slow. It is not the quick death of a bullet to the brain. Fatigue is more like walking through thick, high mud. Like swimming through honey. Like drowning in an ocean. Like being in a bog, surrounded by impenetrable fog. Like a turtle going uphill through molasses in January. It is all of these things simultaneously. It is wearing a lead straitjacket while trying to escape drying cement. It is slow, and it eats you alive from the inside. It is the thick, heavy, slow, drained, helpless, hopeless feeling.

Imagine dealing with all of that, day in and day out. Now experience all of that while trying to be a competent part of society. Subtract caffeine. Add heart palpitations and a minimum nightly requirement of eleven hours of sleep. The hardest part of your day is waking up. The second hardest is getting out of bed. The third is staying awake. An eternal struggle. Stay awake. Be productive. Accomplish your tasks.

Imagine doing all your normal tasks (and they have to be done well and in a timely manner) when you haven’t slept in three days. Now imagine doing that every day. Can you? I can. Because that is what I do every day, because idiopathic hypersomnia means that I need a minimum of eleven hours of sleep in order to feel like I haven’t slept in two or three days. I cannot remember what it is like to feel refreshed, rejuvenated, and awake. It’s been years. I would, without hesitation, amputate an arm or a leg if that was the cure. Think about that.

Take all of that and tell me that fatigue isn’t debilitating. I dare you.

But you know what? No matter how many people read this, there are still going to be those that think fatigue isn’t debilitating. But life keeps going. So, just like that turtle, I will keep going, even if it is always uphill through molasses in January.

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